Discovering Those Hidden in Our Community
By Matthew J. Ramsey, Ph.D.
The summer before my 8th grade year, I was working for my father on the farm. In fact, I’d worked for my father on the farm every summer, but this summer was different because he was paying me a gargantuan sum of $40 per week. This worked out to around $.50 per hour, but it was something. By something I mean $20 in my savings account and enough to buy a CD with some change. It was 1989. Ice-Ice-Baby wasn’t even a thing yet.
One Monday evening my father came home from a Knights of Columbus meeting to inform me that in three weeks time I would be volunteering as a counselor at a camp for individuals with disabilities. Insert minor freak out!
I had no issues surrounding people with disabilities, but this was a time before inclusion and my experience was limited. My chief anxieties centered on not knowing anyone else that would be at this week-long camp and that I would miss out on income. Dad offered to pay me for the week. This was great but did little to squash the discomfort in being a 13-year old who was going to be in the position to negotiate a whole new social situation.
Three weeks later I was packed and ready to go. There were only a few minutes of awkward milling around before a meeting began. We learned a bit about each other, which made things more comfortable. Many of the counselors were in the same position as I – volunteered by a parent and not exactly sure what to expect. As the rules and procedures began to unfold we became more comfortable with each other.
Every counselor was paired with a single camper. This one-on-one relationship proved effective. I was placed with a young man who was slightly older than myself. He arrived at about noon on Monday and we got along well. Our week was full of activities: crafts, swimming, hiking, religious observation, talent shows, the list goes on. He functioned at a level equal to my own and needed no assistance with hygiene or other personal tasks. This was a huge relief in my 13-year old mind. His limitations were intellectual, but that did not interfere with out ability to interact with each other and the activities of the week.
The cast of characters was amazing. The camp directors were two women from my hometown. One was a classic grump, swilling Pepsis and smoking Virginia Slims. The other was a caring woman whose stern love for all was evident in her interactions. One of the counselors was confined to a wheel chair. In his day job he taught art at a private school in southeast Kansas. Watching him manage his physical limitation while working with a camper whose needs were challenging was amazing. There was a tiny 9-year old who helped with the art program and commanded the groups like a veteran teacher. The husbands of the directors ran the food service with the help of several campers and they made each meal a delight. The campers flocked to the priests and nuns who came to camp each day to offer Mass and hang out.
Campers ranged from hormone crazed teenage girls to elderly gentlemen who had spent most of their lives in an institution. Regardless of age everyone interacted free from typical boundaries. This was my first experience with institutionalized behavior which was so prevalent four campers cleaned the dining hall floor after every meal because mopping had been part of their routine. A few of the men woke up at 5:30 am as they had done for years. Without an early morning schedule, they took to the squeaky swing-set and catcalled to the sleeping lady campers.
The high point of the week was a dance on Thursday night. A king and queen were crowned and the cast of our unrehearsed production danced the night away with moves sweeter than any professional troupe, at least in our minds.
Friday morning meant packing, a final Mass, and cleaning. Saying goodbye to the campers was hard. The gratefulness of their family and caregivers was something I had not expected. Leaving my fellow counselors was even harder. How close we had become in such a short period of time!
I needed no external motivation to sign up for camp the next year or the year after that; in fact I attended that camp for the next seven summers. I also began helping out in a religious education program sponsored by my local parish. Many members of the class had also attended camp. Previous to my camp experience I did not even know these individuals existed in the church community. Many of them were my age. It turns out that two were so close in age our mothers took the same Lamaze classes. In the coming years I would spend more and more time with these folks and they became very important to me.
During my third summer at camp I met Phillip. Initially he was not assigned to me; in fact I had one of the most desirable campers around. Each night we had a staff meeting. I usually sat in the back half listening to the announcements and concerns from other counselors. On the first night that year, a young woman, about the same age I was during my first summer, was nearly in tears regarding her camper. He was nonverbal, mostly nonresponsive, but strong and active, very active. The directors indicated that his parents were concerned that he might not be a good fit at camp and would understand if he could not remain with us for the full week. The young counselor was relieved, the director resigned to call in the morning. As this conversation drifted towards the back of the room it struck me as somehow unfair. I stood up and delivered a sermon on our need to do everything in our power to keep Phillip at camp. I explained that his parents might need a break from the 24-hour care he required, that is siblings might need time with their parents, that we should be committed to helping all people, and this might be the only week Phillip was away from those who cared for him everyday. Where this came from is beyond me. Why I volunteered to switch placements is even further beyond me, but Phillip was now mine and would remain mine for several summers.
Phillip and I got along fine. He was the most challenging person I’d ever worked with, but I learned the few signs he knew and engaged with him in the ways we seemed to enjoy. He was 12-years old. His physical stature was small for his age, but he was made of solid muscle. He could climb things like a monkey. We could sign and he had some words, which he uttered in a muffled half cry. By the end of the week he had my name down, if you listened really hard and weren’t particular. Sugar and caffeine were to be avoided. Picking up trash was his favorite activity and we spent hours wandering the grounds so he could clean up. He loved the pool, moved through the water easily, and tried to climb on me whenever I made it to the deep end. He didn’t sleep much so we shared a room away from the other campers. At the end of the week I was exhausted, he was still super energized. In my exhaustion I was satisfied that we had done something worth doing.
It was later that I learned Philip was from my hometown. It wasn’t long before I received a call asking if I’d be willing to babysit. You see his parents had two other children and because of Philip’s needs they had never attended a baseball game or dance recital together because some had to be home with him. I began scheduling time with him once a week. He then started coming to the religious education class as my experience with him allowed him to benefit from the program. This routine went on until I moved away.
My grandparents lived in his neighborhood and I’d drive by his house often when I was back home. I always wanted to stop, but never quite found the courage to do so. Over twenty years after we first met, I saw him standing in the doorway of the house and had to stop. I was home helping to clean out the house after the death of my grandfather and knew I might not find myself in that neighborhood again. It took his mom a bit to remember who I was, but Phillip knew. He immediately said my name in is own way. My heart melted. I won’t admit that a tear or two welled up in my eye as I walked back to the car. Olivia, my daughter, was along and was terribly confused by the whole interaction. I tried to explain my history with Phillip. She thought he sounded funny.
What Olivia and Phillip’s mom didn’t understand was that Phillip is one of the most influential people in my life. To Olivia he is another person with a disability I know and to his mom I was one caregiver in a lifetime of caregivers. From my perspective Phillip gave me a career. All those years ago when our weekly contact came to a close, I moved on to college and majored in special education. Phillip helped me learn not only what those with disabilities need to be included in our communities, but also what support families need to function. The total of these interactions, which I shared with more people than I can possibly remember, both those with and without disabilities, served to show me that there were people hidden in my community who offered rich interaction and experience. Somewhere along the way these experiences became less of a job and more of…I don’t know…a social life?
I try to convey this knowledge to my students who will teach in both general and special education classrooms, but without a Phillip of their own I wonder if those who are preparing to teach individuals with disabilities will have the perspective they really needs to enter the field. I’m never quite sure I have what it takes to show them what individuals and their families require. Luckily I find that most of them do have a Phillip, maybe a brother or a cousin or even an uncle. Their stories come through as we have more classes together. In the same way Phillip was my teacher, so are my current students. We are all here to learn from one-another, we just have to make sure that everyone has a place in our community.
Matthew J. Ramsey is an Associate Professor of Special Education at Benedictine College in Atchison, Kansas. He began working with individuals with disabilities at a young age through the Holy Family Camp in Wichita, Kansas. His professional career includes five years as a teacher of students with severe emotional and behavioral disturbances in psychiatric treatment, two years as a principal in a private, special purpose school, and seven years in his current position. He finished his Ph.D. with the help of a generous OSEP fellowship in the spring of 2013. His research interests include the funding of special education programs and the training and supervision provided to paraprofessionals. He lives with his two children, Henry and Olivia, in Atchison, Kansas.
I’m Not a Volleyball Player, but I Am a Reader
By Melinda M. Leko
When I consider my identity I immediately think of my roles as mother, teacher, wife, daughter, friend, researcher, animal lover, and reader. I do not, however, identify as volleyball player. This is because frankly, I am terrible at volleyball. In fact, I haven’t played volleyball since 7th grade when my P.E. class was in the middle of a 6-week unit on volleyball. I served the ball, and it went sailing behind me and directly onto the head of our P.E. teacher who was knocked off the bleacher upon which she sat. My classmates thought this was hilarious. I did not. Luckily the P.E. teacher was not seriously injured, but the same can’t be said for me and my pubescent, hormonally volatile pride.
Fast forward to today. Despite being a terrible volleyball player I think I have led a relatively successful life thus far. My lackluster volleyball skills have not acted as barriers to my life’s goals. Not being good at volleyball did not make it more likely for me to dropout of school, be adjudicated, or rejected from college. Even though I can’t play volleyball well, I have still been able to pursue the education and career of my choice.
Sadly, the same cannot be said for adolescents with (or without) high-incidence disabilities who lack proficient reading skills. These students are more likely to be retained, feel isolated from the larger school community, and ultimately drop out of school (Daniel et al., 2006; NCES, 2003). Unlike volleyball, literacy permeates our lives. It is a skill upon which our entire society is based. Not being a good reader or writer in our world can have dire consequences. It is at the intersection of disability, literacy, and adolescence that much of my research is situated. How do we as a society support adolescents with high-incidence disabilities who struggle with reading? How do we prepare their teachers who, at the secondary level, often do not view the teaching of reading as their responsibility (Kamil, 2003)? How do we make learning to become a more proficient reader age-appropriate and motivating for students who have experienced a long history of challenges, frustration, and humiliation regarding their reading skills?
In the past few years, after describing my research interests, several people have said things like, “Why spend time teaching these students to read better when computers and apps can read for them?” Hmmm, good point. Technology can decode unknown words for students and tell them the meaning of those unknown words. Technology can spell words and record students’ stories. There’s no question that technology is pretty amazing. It allows us to communicate, learn, and live in ways that constantly amaze me. Personally, it comes down to issues of equity, accessibility, reliability, and quality of life. Not finding effective and efficient ways to teach older students how to become better, more proficient readers and instead using technology as a “fix,” assumes that all students, once they become adults, will have financial access to expensive and rapidly evolving technology and software. I might be more in favor of the idea if it was, completely reliable. No power surges. No Internet or server or router outages. No lost cell phones. No dead batteries. Or (and I know this one is completely operator error) as I like to refer to it: cell phone + washing machine = sad Melinda! Here’s another idea to consider. The world of today is not to the point that everything is digitized and full of embedded supports. I still read street signs, parking tickets (oops), nutrition information on food packages, menus in restaurants, my kids’ notes home from school, etc. Whenever I teach a reading methods course to special education pre-service teachers I often ask them keep a log for one day and record every time they read something. The result every semester is the same. They are astounded by how much reading they do throughout the day without even realizing it. As skilled readers, so much of our day-to-day interactions with text occur naturally and automatically. What happens if it wasn’t natural or automatic? Finally, there is the issue of ease and quality of life. My literacy skills allow me to navigate our world fairly easily. I can read a book on my iPad, but if it is not available electronically, I can read the old-fashioned hard copy version. Most importantly, I identify as a reader. I “fit in” in a world that revolves around literacy.
I would imagine in the not too distant future this blog will be completely obsolete. But for now, what should we do to help adolescents whose futures do depend on their reading and broader literacy skills? Is there a middle ground? I think so. Scammacca and colleagues, in their meta-analysis of interventions for adolescent struggling readers, found that adolescence is not too late to intervene (2007). We should empower students by helping them acquire the skills and strategies that will promote their independence and success in literacy, while also teaching them about technology-based supports and how they can be a resource. Let’s help students think of themselves as readers. Don’t think that just because they are older it’s too late, or it’s not worth the trouble! Just please don’t ask me to play volleyball.
References
Daniel, S. S., Walsh, A. K., Goldston, D. B., Arnold, E. M., Reboussin, B. A., & Wood, F. B. (2006). Suicidality, school dropout, and reading problems among adolescents. Journal of Learning Disabilities, 39, 507-514. doi: 10.1177/00222194060390060301
Kamil, M. L. (2003). Adolescents and literacy: Reading for the 21st century. Washington, DC: Alliance for Excellent Education.
National Center for Education Statistics (NCES) (2003). The condition of education 2003. Washington, D.C.: Author.
Scammacca, N., Roberts, G., Vaughn, S., Edmonds, M., Wexler, J., …. Torgesen, J. K. (2007). Interventions for adolescent struggling readers: A meta-analysis with implications for practice. Portsmouth, NH: RMC Research Corporation, Center on Instruction.
Melinda Leko is an Assistant Professor in the Department of Special Education. Her research centers on high-incidence disabilities, reading instruction, and special education teacher quality. Currently she is interested in better understanding how to prepare secondary teachers to deliver high quality basic reading instruction to adolescents with disabilities, particularly in inclusive classrooms. She is also interested in understanding issues of teachers’ implementation of interventions. She earned her PhD at the University of Florida and worked as an Assistant Professor at the University of Wisconsin-Madison prior to becoming a faculty member at KU.Dr. Leko serves on the editorial boards for Remedial and Special Education, Journal of Teacher Education, and Intervention in School and Clinic. She served as co-editor for the special issue of Remedial and Special Education on qualitative research in special education (Volume 35 Numbers 5-6).
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